Lupus & Lyme Disease: Is it Lyme or something else?

Contents:

How is Lyme disease diagnosed? How is that different from a lupus diagnosis?

How are Lyme disease and lupus treated?

What is the outlook for people with Lyme disease vs. lupus?

In Conclusion

What is Lyme disease and what does it have to do with lupus?

As if diagnosing lupus was not difficult enough, we are going to add to the complexity by discussing how lupus and Lyme disease (or chronic Lyme disease) might get confused when trying to make an accurate diagnosis. The difficulty lies in the fact that the symptoms of the various stages of Lyme disease can mimic some of the common symptoms of systemic lupus erythematosus (commonly known as SLE or lupus), an autoimmune disease. For a physician to make the correct diagnosis, he/she will need to fully understand how the patient’s symptoms developed and take into consideration laboratory test results.

Lyme disease is a bacterial infection contracted from the bite of a disease-carrying tick. The illness is caused by the organism Borrelia burgdorferi. This bacterium is known as a spirochete that is carried by a deer tick. It is only transmitted to people or other animals by being bitten by a tick. The first signs of Lyme disease may develop within days or take months, and in the majority of cases, it is successfully treated with a two to four week course of oral antibiotics.

The chronic Lyme disease debate:

Here is where the clarification between Lyme disease, lupus, mixed connective tissue disorders (MCTD), chronic fatigue syndrome (CFS), fibromyalgia, and other autoimmune diseases needs to be made. The term “chronic Lyme disease” (CLD), a highly debated term and topic, has been used to describe people with many different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, on many occasions, it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi .

One of the reasons we are writing this blog is that the CDC does not recommend using the term chronic Lyme disease because it may lead to more serious conditions going undiagnosed. Unfortunately, the term is commonly used when no other diagnosis is reached for the symptoms. Organizations such as LymeDisease.org are battling to have the IDSA (Infectious Diseases Society of America) treatment guidelines removed from the National Guideline Clearinghouse, a branch of the U.S. Department of Health and Human Services. When more serious illnesses are not being diagnosed accurately, a patient might not be getting the proper treatment needed to reduce symptoms, have a better quality of life, and optimum chance for future well-being. Back to top

What are the symptoms and how is it similar to lupus?

Patients who seek medical attention because they are experiencing the symptoms of chronic disease rarely have the same types of symptoms. For example, lupus, chronic fatigue syndrome, MCTD, and Fibromyalgia can have a wide array of symptoms that overlap with other chronic disease diagnoses. In Lyme disease, like in lupus and many of the autoimmune diseases, it is very uncommon to see two different patients with identical symptoms.

One glaring similarity between lupus and the complex of infections known as Lyme disease, is the multiple possible symptoms of each illness and their ability to affect multiple body systems at the same time. This is one reason that both of these conditions are also known as “the great imitators”- because they can mimic numerous chronic diseases. Read more about lupus signs and symptoms by clicking here.

Here is more information on specific symptoms, how Lyme disease and lupus are similar, and how they differ:

Rash

Approximately 70-80% of those infected with Lyme disease will develop a small red spot at the site of the tick bite that grows larger over a period of days or weeks into circular or oval-shaped reddish rash (called erythema migrans) often described as a bulls-eye shaped rash. This rash can be small or very large and as the infection spreads, the rash may appear on other parts of the body. Erythmea migrans rash is not to be confused with the lupus butterfly rash, or malar rash, that presents over the bridge of the nose and across the cheeks in some lupus patients. See below images.

Other common symptoms of Lyme disease may begin any time between three and 30 days after infection and may resemble a flu-like illness with fever, joint and muscle pain, chills, mental confusion, headache, and stiff neck. Although these symptoms may be very similar to those of common viral infections, such as the flu, Lyme disease symptoms will tend to last longer or may come and go over time. Experiencing flu-like symptoms is also quite common in those with lupus.

Headache

Headache is listed by the CDC as a symptom of Lyme disease. If the infection goes untreated or chronic infections occur, this symptom may continue. Headache is also a common symptom of lupus as the blood vessels in the head can be affected by the disease (vasculitis). This can lead to the headaches often experienced by lupus patients.

Fever

Fever is a common symptom of both lupus and Lyme disease. But fever will appear most often in early-stage Lyme disease. Experiencing fevers intermittently (off and on) is more common with lupus, but typically happens when the patient is experiencing a lupus flare.

Fatigue

Those with both Lyme disease and lupus commonly experience fatigue. Fatigue is most noticeable during the early-stages of Lyme disease. Fatigue associated with lupus is usually unrelenting and often debilitating. As many as 90% of lupus patients will be affected by chronic fatigue. This may also make it easy to confuse Lyme disease with chronic fatigue syndrome.

Joint Pain

Both lupus patients and those with Lyme disease may have arthritis symptoms where affected joints are swollen and painful. In Lyme disease, the arthritis commonly affects the knees, but less often, other larger joints.

In lupus, the knees and large joints may be affected but the smaller joints of the hands, wrists, ankles and toes are also often involved. In both lupus and Lyme disease, the arthritis is described as cyclic, meaning that there are periods of high activity of symptoms and other periods of little to no arthritic symptoms. In other forms of arthritis such as rheumatoid arthritis and osteoarthritis, the symptoms are both chronic and progressive (get worse over time). Approximately 90% of lupus patients will experience some form of joint or muscle pain while only 10-20% of those with chronic Lyme disease develop arthritis (according to the National Institute of Allergy and Infectious Diseases).

Neurological Problems/Cognitive Dysfunction

Cognitive dysfunction (brain fog) and other neurological problems can occur in both Lyme disease and in lupus but for different reasons.

Lyme disease can cause inflammation of the membranes surrounding the brain (meningitis) which can result in temporary paralysis on one side of your face (called Bell’s palsy), and numbness or weakness in the limbs and/or impaired muscle movement.

Another condition that may cause neurological issues is peripheral neuropathy. This can occur in diseases where the immune system attacks the body’s own nerve tissues, leading to nerve damage. Some of these diseases may include systemic lupus erythematosus, Sjögren’s, rheumatoid arthritis, etc. Some symptoms of neurological involvement with these diseases may include:

Tingling in hands and/or feet

Pain described as sharp, stabbing or burning

Loss of balance

Numbness in hands and/or feet

Heavy feeling in the arms and/or legs, sometimes described as feeling like your legs or arms “lock” in place

The feeling of wearing tight gloves or socks when you are not

Buzzing, vibrating or shocking sensation in muscles

Less common signs and symptoms

Heart Problems: In later stages of Lyme disease, it is possible for heart problems, such as an irregular heartbeat to develop. These problems rarely last more than a few days or weeks.

In Lupus, heart disease is a major complication. It is a leading cause of death among people with lupus. Blood tests, chest X-rays, an electrocardiogram (EKG), or an echocardiogram may be used to find out if your heart condition is caused by lupus.

Eye Inflammation: Lyme disease may cause eye inflammation. In lupus patients, eye inflammation can be caused by disease activity, medications, or even an overlapping condition such as Sjogren’s Syndrome.

Liver inflammation (hepatitis): A study published in 2014 by the online journal, Research Open Access suggests that persistent infection may cause hepatitis (inflammation of the liver) in Lyme disease.

People with lupus may experience problems in any area of the GI (gastrointestinal) system, including the surrounding organs such as the liver, pancreas, bile ducts, and gallbladder. Some of these problems may be related to side effects of medication, or other diseases that may be present and not necessarily lupus disease activity.

Kidney Inflammation: Lyme disease itself may lead to kidney complications that can mirror the symptoms of active lupus nephritis. Lyme disease kidney failure more likely occurs in the disease in dogs rather than humans. Back to top

How is Lyme disease diagnosed? How is that different from a lupus diagnosis?

Diagnosing Lyme disease

Because the symptoms are so varied, a complete and proper diagnosis requires highly experienced and specialized doctors. Rheumatologists are the physicians that treat both Lyme disease and lupus.

Although a tick bite is an important clue for a Lyme disease diagnosis, many patients often cannot recall having been bitten by a tick. This is not a surprising due to the fact that ticks are tiny and their bites are usually painless.

The simplest way to diagnose Lyme disease is to see the unique bull’s-eye rash. But if the patient is presenting with symptoms and there is no visible rash (only ¼ of those infected present with a rash) some blood tests might be ordered to look for antibodies against the bacteria. The Lyme disease bacterium itself is, unfortunately, very difficult to isolate or culture from body tissues or fluids.

Thesebloodtests are:

ELISA: This blood test measures the levels of antibodies against the Lyme disease bacteria that are present in the body. Antibodies are molecules or small substances tailor-made by the immune system to lock onto and destroy specific microbial invaders.

Western blot: This blood test identifies antibodies directed against a panel of proteins found on the Lyme bacteria. The test is ordered when the ELISA result is either positive or uncertain.

The presence of antibodies, however, does not prove that the bacterium is the cause of a patient’s symptoms. The presence of specific antibodies suggests a prior infection, which may or may not still be active.

Important to note: Antibody tests given within the first few weeks following infection (when the rash first appears), are not reliable because a patient’s immune system has not produced enough antibodies to be detected. If any antibiotics were given to a patient early during infection antibodies might not be at detectable levels when tested, even though the Lyme disease bacterium is the cause of the patient’s symptoms.

Diagnosing Lupus

Lupus is not diagnosed in the same way as Lyme disease. For more information on how lupus is diagnosed, please read our blog, Diagnosing Lupus and Lupus tests. Back to top

How are Lyme disease and lupus treated?

Lyme disease

In its early stages, Lyme disease can be effectively treated with antibiotics. The chances of a quicker and more complete the recovery increase the sooner the therapy begins following infection.

Medicines used to treat Lyme disease may include antibiotics such as doxycycline, amoxicillin, penicillin, or erythromycin, typically taken orally for two to four weeks. The type of anti-biotic prescribed will be different depending on the patient. Special consideration should be given to children, pregnant women, those allergic to certain medications or patients with heart symptoms. These antibiotics may speed the healing of the rash and will often prevent other more serious symptoms such as arthritis or neurological problems.

There is no strong evidence that prolonged antibiotic therapy (longer than two weeks) is more effective than two weeks of therapy. Prolonged antibiotic use may actually have serious side effects. Some patients will still have fatigue and achiness following treatment. These symptoms can take months to completely disappear.

For more serious cases of Lyme disease or for cases with nervous system involvement, intravenous (IV) antibiotics may be used.

If your symptoms are persisting much longer after the two to four week course of anti-biotics has finished, please ask your physician to check for other possible underlying causes other than Lyme disease before continuing prolonged anti-biotic use.

There is no evidence that the Borrelia infection causes chronic fatigue syndrome or fibromyalgia. Although some patients with Lyme disease may still develop these or other medical problems, as with other patients who get chronic fatigue or fibromyalgia, long-term antibiotics will not have any bearing on recovery.

Lupus

Treatment for lupus is very different to that of Lyme disease and is often dependent on the symptoms that the patient is experiencing. Almost every lupus patient will be placed on an anti-malarial drug such as Plaquenil (also known as “lupus life insurance”) and some type of anti-inflammatory medication. To learn more about the medications and treatments for lupus, please read our blog Lupus Treatment Options: Lupus Medications. Back to top

What is the outlook for people with Lyme disease vs. lupus?

In Lyme disease

Most people with Lyme disease respond well to antibiotic therapy and will recover fully. Some people may have recurring or persistent symptoms. Lyme disease, if left untreated, can cause permanent damage to the heart, nervous system, and joints.

Having once had Lyme disease with successful treatment is no guarantee that the illness will be prevented in the future. The disease can occur again in the same individual if they are bitten again and re-infection takes place. The antibody test usually remains positive for months to many years after an infection but this does not mean that continued treatment with antibiotics is necessary.

In Lupus

In lupus, there will typically be periods of flares, with high disease activity, and remissions, where there is little to no activity. Serious complications may occur with SLE, as lupus is an unpredictable disease and every patient is very different. Although there is currently no cure for lupus, today’s modern medications and treatments can be very effective in helping people with lupus live longer, healthier lives. You may ask, “What is the life expectancy for someone with lupus?” The prognosis (or the prediction of the outcome of the disease) does depend a lot on the severity of each individual’s lupus. Those with milder lupus disease activity, do tend to do extremely well and live a normal life expectancy, while those with severe internal organ involvement can still potentially die from the disease, especially if they do not receive timely and appropriate treatment. Getting appropriate medical care, taking prescribed medications, and choosing to live a healthy lifestyle are all things people with lupus can do to stay healthy. With careful treatment, 80 to 90 percent of people with lupus can expect to live a normal lifespan. Back to top

In Conclusion

Lyme disease is a bacterial infection contracted from the bite of a disease-carrying tick that can often be cured through a short course of antibiotics. Although the symptoms are similar to those in lupus and other autoimmune conditions, the diagnosis and treatment plans differ vastly. If you have been bitten by a tick and treated for Lyme disease, your symptoms should lessen over time, but prolonged fatigue and achiness may linger for some time after treatment has finished.

If, after extensive testing, there is no clear answer for your symptoms, most doctors will probably recommend cautious monitoring and finding ways to manage the symptoms. This may include drugs to manage inflammation for joint or muscle pain, for example. Therapies used to manage conditions such as chronic fatigue syndrome or depression, including getting good sleep, reducing stress, making dietary changes, and exercise habits may also be recommended.

If your symptoms continue to persist, become more severe over time, or you have no indication of the antibodies for Lyme in your system please ask your doctor to check for other underlying causes such as a thyroid condition, anemia, viral infection (like Epstein-Barr virus), or other autoimmune conditions such lupus, fibromyalgia and the others mentioned above.

*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus. **All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.

*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at info@mollysfund.org for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus.

**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.